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Shifting the Paradigm on Disability

A conversation with an international disability rights advocate

David Wilkins, faculty director of the Harvard Law School Center on the Legal Profession, recently sat down with Janet Lord, senior research fellow at the Harvard Law School Project on Disability (HPOD) and a senior legal adviser to the UN special rapporteur on rights of persons with disabilities, to talk about systemic disability rights work.

David B. Wilkins: You’ve had such a varied and interesting career in the disability rights area. Could you start by talking about how you got into this space and what’s been your journey from a lawyer to a scholar to a public advocate to a professor?

Janet Lord: I certainly never imagined I would have a role in working with people around the world to draft a treaty on the rights of people with disabilities at the United Nations. I was really drawn into the disability rights realm because of family experiences. Both of my parents had disabilities. My father was a brilliant mathematician who had a serious mental illness and took his own life when I was very young. And my mom too had a disability as she was born with a mild, but nonetheless challenging, case of spina bifida.

Litigation is important. Drafting laws is important. But equally important is the role that lawyers can play in socializing these ideas and these concepts.

I was drawn into the human rights field specifically because I had wonderful mentors, both of whom were Holocaust survivors: Louis Sohn, who was the Bemis Professor of International Law at Harvard Law School and in his retirement was a research professor at George Washington Law School, where I did my LL.M., as well as former International Court of Justice judge Thomas Buergenthal, a graduate of Harvard Law School. Both were pioneers in the field of international human rights law. I also had the opportunity to do some volunteer work with the UN disability program very early on. And then I focused my first published paper on the issue of land mines and, in particular, the survivor assistance side of things where disability rights are a huge issue. It was work monitoring the Mine Ban Treaty for a survivor assistance organization that really took me into the field of international disability rights.

Then, lo and behold, Mexico initiated the process at the UN that would eventually result in the adoption of the Convention on the Rights of Persons with Disabilities (CRPD). And it turned out that the organization I was working for knew a little bit about drafting and monitoring treaties and had some human rights expertise, so we became very fully involved in the drafting of the treaty and bringing land mine voices into that process. So that was really the genesis of my working on a full-time basis as a human rights lawyer, trying to advance the rights of people with disabilities.

Wilkins: Janet, it’s a wonderful segue to something that I really think you’re uniquely able to help us understand, which is what is the role of international agencies and development in cause lawyering for people with disabilities and their rights? We often look at what you might think of as more traditional litigation in courts and in national contexts, but you really have spent most of your career thinking about how the international public sector approaches these problems. Could you talk a little bit about what you think the strengths of that space are, but also what are the challenges of addressing these issues in that context?

Lord: I couldn’t have imagined at the beginning of the drafting process for the CRPD what it would become. It loomed large as an idea, but we really didn’t know what that ultimately would mean in practice. Once we achieved the adoption of the treaty, what would it do? What is so fascinating about human rights treaty practice is it takes us well beyond legislative enactment or court invocation. Litigation is important. Drafting laws is important. But equally important is the role that lawyers can play in socializing these ideas and these concepts. Shifting social norms around disability is really crucial because otherwise you’re going to get nonreceptive judges or nonreceptive legislators who may be trying to do the right thing but have no clue how to go about doing it.

I work to raise awareness among treaty bodies who may not have ever thought about disability rights simply because they have no awareness of the barriers that people face.

Even among the disability community, many ask, what are the core concepts around this treaty? What does the social model orientation of disability mean? We’re not talking about preventing disability. We’re not talking about charity or limited social welfare provisions. This is a much larger project that requires shifting the paradigm of disability. Much of the work that I have done is focused on getting the voices of people with disabilities in decision-making processes, whether within a large-scale international development bank, like the World Bank, or a smaller-scale humanitarian assistance organization that is assisting people with disabilities in natural disaster conflict settings—or even trying to sensitize the architecture of the UN human rights system to these issues. I work to raise awareness among treaty bodies who may not have ever thought about disability rights simply because they have no awareness of the barriers that people face. So, the project is daunting.

We knew that we were fighting a battle on multiple fronts. We were trying to integrate a disability rights-based approach into mainstream human rights work, and that had not been done. We were also trying to sensitize international development agencies and humanitarian organizations about disability. And, ultimately, we wanted the treaty to take root domestically in different jurisdictions.

Wilkins: This is completely fascinating. And of course, conflicts around the world have now refocused attention around issues of persons with disabilities. You also have this other very interesting part of your life, which is Blue Law. Could you tell our readers about Blue Law, and how does it fit with your overall advocacy?

Lord: I became involved in the founding of this small international law and development firm that was started by some ex-military officers who, in their retirement, wanted to do international development and humanitarian work. The firm had an interesting genesis. The main founder was a former air force JAG officer who ended up getting a contract to defend Guantanamo Bay prisoners, so he founded the firm as a sort of parent company. Then his nonlawyer partner said, “We’d love you to expand this work into the development space.” I was brought on to help develop the international human rights and inclusive development practice, which has been almost solely focused on disability rights, because that’s my passion. I’ve been able to work with different development programs, like the UN, USAID, and other donors, to ensure that they actually reach people with disabilities.

One of the big challenges that we face in Ukraine is to ensure that people with disabilities are able to evacuate, that they’re protected and included in humanitarian assistance.

Wilkins: How have these issues been accelerated or refocused because of current events like the war occurring in Ukraine?

Lord: Ultimately, the majority of people with disabilities, as we know, live in poverty. If you do not address their needs, you’re not going to be able to address poverty or development issues more generally. You think it wouldn’t be all that much of a push to get people to build an accessible school in a place like Afghanistan or make sure medical clinics are accessible to people with disabilities, but that turns out to be actually quite challenging.

That’s been a big focus of my work in disability-inclusive international development—trying to open up space to talk about disability inclusion and actually to show how it is possible to work with local disability grassroots organizations and to have them do meaningful work in international development. That might be enhancing inclusive education or ensuring that an HIV and AIDS program is actually accessible to people with disabilities or doing election access work that helps to give visibility to the disability community and at the same time opens up electoral processes to broader citizenry.

More recently through my work as a senior adviser to the UN special rapporteur on the rights of persons with disabilities, we have been focusing on the implementation of the very first UN Security Council resolution addressing the protection of persons with disabilities in armed conflict, Resolution 2475. We never imagined that it would be so front and center in the context of thinking about how to apply the Security Council resolution tangibly on the ground, but there over 17 hot armed conflicts going on currently around the world.

One of the big challenges that we face in a place like Ukraine is to ensure that people with disabilities are able to evacuate, that they’re protected and included in humanitarian assistance. It’s also important to make sure that as the international community collects evidence of possible war crimes, it includes war crimes impacting persons with disabilities. And that has been very much left out of the equation time and again. There were a number of notable cases in the Holocaust where persons with disabilities were among the very first victims of the Nazis. Persons with disabilities have likewise been victimized in other conflicts, like Rwanda, Cambodia, and Iraq. And yet international criminal law mechanisms have largely ignored these crimes.

In the ensuing years, although there has been a lot of progress in elevating, for example, gender-based crimes and crimes against children, there has been less attention paid to crimes perpetrated against individuals with disabilities. And so that’s been a heavy emphasis of the work of the current special rapporteur for whom I’m working, and that dovetails with some of the work I’m doing with colleagues at the Harvard Law School Project on Disability, trying to ensure that as evidence is collected, it is inclusive of crimes perpetrated against individuals with disabilities; for instance, addressing the plight of persons with disabilities in Ukraine’s dismal system of institutions for adults and children with disabilities.

There are many examples of people with disabilities still being very explicitly denied the right to be a judge or to be a lawyer, and it’s written right into legislation.

Wilkins: One place where far too little attention has been paid to persons with disability, notwithstanding what should be a culture of total inclusiveness and equality, is the legal profession. I wonder if you could reflect a little bit about that and how it plays out globally.

Lord: I had the great fortune of being involved in the CRPD treaty-drafting process and working alongside many lawyers with disabilities and disability rights activists. But I’ve also been able to learn from my work about the incredible barriers that people with disabilities still face in entering the legal profession. It was sort of a late addition to the treaty, but we worked hard to get some language in the treaty around the right of people with disabilities to participate in access to justice in every domain, whether as a lawyer, as a judge, etc. But we still know that there are unique barriers.

One woman I worked with was a blind lawyer from the West African country of Benin, and she wanted to realize her dream of becoming a judge. She went in to apply to sit the judicial examination and handed in her application with a request that the exam be provided in an accessible format, which for her would be braille, and she was dismissed. She was deemed ineligible from taking the exam, and her colleagues in the disability community said, “Just leave it. Don’t go further with this. It is what it is.” But she took her case to the Constitutional Court, who ultimately agreed that this was an instance of discrimination. The problem was there was no remedy as she had missed her opportunity to take the exam. There are many examples of people with disabilities still being very explicitly denied the right to be a judge or to be a lawyer, and it’s written right into legislation. But even before that, one of the biggest barriers to this path is higher education.

Disability, like gender, is a crosscutting issue, and there are opportunities to see those issues integrated into all dimensions of the law.

Wilkins: I want to stay with law school for a minute, because, of course, one thing that is critical is making legal education accessible to people with disabilities. But another is focusing legal education on the issues surrounding people with disabilities. So, I know you teach. Could you talk a little bit about both what you see law schools doing and what you wish they were doing more of in this area?

Lord: The Convention on the Rights of Persons with Disabilities is one of the most exciting, dynamic, interesting areas of international human rights law and practice. One of the things we’ve tried to do is to integrate it into mainstream human rights classes. I recently worked in the country of Georgia to put together a syllabus for the first disability law class. I have had the good fortune of teaching disability rights around the world with colleagues like Professor Michael Stein at HPOD. And there are lots of opportunities to teach disability rights law or to run a disability rights clinic, which is where many of the folks I worked with trained to become incredible activists.

But what about integrating disability rights across the curriculum? Because disability, like gender, is a crosscutting issue, there are opportunities to see those issues integrated into all dimensions of the law. That’s part of the disability rights project—to elevate and amplify the voices of people with disabilities across the curriculum. And we’re starting to see more attention paid to that. For instance, there’s the Organization for Security and Co-operation in Europe, which has launched a new Disability Rights Moot Court. And we are seeing more countries around the world develop disability rights law clinics, which is incredible.

I think one role the Harvard Law School Project on Disability has been able to play is to keep ensuring that mainstream legal texts are always integrating a disability perspective. And that’s been something that we’ve been trying to do over the last many years since the treaty was adopted because disability rights were really off the page. And mainstream human rights organizations are still struggling to address these issues, and they don’t have the internal capacity to do so. Maybe if they hired lawyers with disabilities, they would.

Wilkins: Janet, this has been so fascinating and so helpful for our readers. I just want to end with this: we have a lot of law students and young professionals who read The Practice. What advice would you give someone who wants to be you in another 10 years? Are there things that you would recommend somebody to be doing either in law school or in the first few years of their practice that might help prepare them to be able to address and grapple with these issues and be a positive participant in these critical debates in the years moving forward?

Lord: Absolutely. There are certainly opportunities in every state to support disability law work, like local clinics advising people with disabilities. Helping to start a disability law clinic at a law school and working with local disability rights activists offering pro bono services is a great entry point to learning about different areas of disability rights work. On the international front, there are all sorts of organizations who are doing work on disability rights, whether advising governments or undertaking collaborative research. Wherever you find yourself—whether it’s working in a big law firm that does pro bono services or working in the corporate sector in the DEI space—you should make sure that disability is on the radar screen.

There are unique opportunities to take part and to team up with disability organizations through some of the big disability organizations like the International Disability Alliance or the World Blind Union or the World Federation of the Deafblind. There are opportunities to be involved and to use legal skills, particularly in pro bono spaces, to get started. That’s certainly how I got started, doing volunteer pro bono work for the UN disability program. Do some pro bono work and see where the needs are.

Wilkins: We are so glad that you followed your passion and that you are willing to work so tirelessly in so many different arenas around these critical areas. I have no doubt that our readers will be greatly inspired by your example and learn a great deal from this conversation. Thank you very much.


Janet Lord is a senior research fellow at the Harvard Law School Project on Disability and senior legal advisor for rule of law and inclusive development programs at New-Rule LLP. She is also senior legal adviser to the UN special rapporteur on the rights of persons with disabilities. She has been teaching at University of Maryland’s Francis King Carey School of Law since 2007. She also served as senior partner and director of human rights and inclusive development at BlueLaw International LLP, a veteran-owned international law and development firm.

David B. Wilkins is the Lester Kissel Professor of Law at Harvard Law School, vice dean for Global Initiatives on the Legal Profession, and faculty director of the Center on the Legal Profession.

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